Guest guest Posted September 25, 2006 Report Share Posted September 25, 2006 An elevated MCV blood value (Mean Corpuscular Volume) is typically elevated in DS (90 - should be in the 80's). It is elevated because of the CBS gene creating a folate/B12 deficiency. If this gets too high, it can lead to leukemia. Homocysteine levels are typically low in DS as well, for the same reason that the MCV is high - the CBS gene. You can lower the MCV and raise the homocysteine by supping Methylcobalamin B12, TMG and Folinic Acid. My brother's MCV was 90 and his homocysteine was 4 back in January. When we found out about the info above and how to fix those levels, we started supping my brother with extra TMG (500 mgs extra) and MethylB12 (1/4 of a 1000mcg lozenge). Well, we just got back his blood work this month and his MCV is now 87 (very good) and his homocysteine is up to 6 (excellent). Just thought I'd pass this info onto others who are interested. Qadoshyah *Got Down Syndrome? www.gotdownsyndrome.net Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2006 Report Share Posted September 25, 2006 good news! and i appreciate your post(s)--beverly On Monday, September 25, 2006, at 04:29 PM, Qadoshyah wrote: > An elevated MCV blood value (Mean Corpuscular Volume) is typically > elevated in DS (90 - should be in the 80's). It is elevated because of > the CBS gene creating a folate/B12 deficiency. If this gets too high, > it can lead to leukemia. > > Homocysteine levels are typically low in DS as well, for the same > reason that the MCV is high - the CBS gene. > > You can lower the MCV and raise the homocysteine by supping > Methylcobalamin B12, TMG and Folinic Acid. > > My brother's MCV was 90 and his homocysteine was 4 back in January. > When we found out about the info above and how to fix those levels, we > started supping my brother with extra TMG (500 mgs extra) and > MethylB12 (1/4 of a 1000mcg lozenge). Well, we just got back his > blood work this month and his MCV is now 87 (very good) and his > homocysteine is up to 6 (excellent). Just thought I'd pass this info > onto others who are interested. > > Qadoshyah > > *Got Down Syndrome? > www.gotdownsyndrome.net > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2006 Report Share Posted September 29, 2006 Qadoshyah, You seem to be very informed on medical testing. Sam's 6 year check up is coming up in December. What tests do you suggest I ask for? How do you figure out from the results of the tests what to supplement? This has always seemed very complicated to me. Sue Mayer Mom to Sam (5) DS & on NACD Program Elevated MCV blood value & low homocysteine levels An elevated MCV blood value (Mean Corpuscular Volume) is typically elevated in DS (90 - should be in the 80's). It is elevated because of the CBS gene creating a folate/B12 deficiency. If this gets too high, it can lead to leukemia. Homocysteine levels are typically low in DS as well, for the same reason that the MCV is high - the CBS gene. You can lower the MCV and raise the homocysteine by supping Methylcobalamin B12, TMG and Folinic Acid. My brother's MCV was 90 and his homocysteine was 4 back in January. When we found out about the info above and how to fix those levels, we started supping my brother with extra TMG (500 mgs extra) and MethylB12 (1/4 of a 1000mcg lozenge). Well, we just got back his blood work this month and his MCV is now 87 (very good) and his homocysteine is up to 6 (excellent). Just thought I'd pass this info onto others who are interested. Qadoshyah *Got Down Syndrome? www.gotdownsyndrome.net Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2006 Report Share Posted September 29, 2006 I'd request the following tests: CBC (complete blood count) Zinc Selenium TSHFree T4 Free T3 Iron Ferritin Homocysteine We always get a copy of the lab results from our doctor so we can see the test results ourselves. Since, not all doctors are very experience with DS and do not know all of their needs and tweaky test results (such as low homocysteine being typical, high MCV being typical, zinc and selenium deficiency, etc). When we get the lab work, we look over it all. And, since all labs will have an accepted range of all the different things, you can get an idea of if something is on the low end, off the range, on the high end or above the range. And, after looking that certain thing up, researching about it and asking on message boards, you can figure out what to supplement. Like, when zinc is on the low end of the range or off the range, we may up his zinc supplementation. Or, with the MCV and homocysteine, when we first found out about it, we researched it out and found out we could supplement TMG and MethylB12 to fix it. Does that help? Qadoshyah *Got Down Syndrome? www.gotdownsyndrome.net From: Down Syndrome Treatment [mailto:Down Syndrome Treatment ] On Behalf Of Sue MayerSent: Friday, September 29, 2006 11:58 AMDown Syndrome Treatment Subject: Re: Elevated MCV blood value & low homocysteine levels Qadoshyah, You seem to be very informed on medical testing. Sam's 6 year check up is coming up in December. What tests do you suggest I ask for? How do you figure out from the results of the tests what to supplement? This has always seemed very complicated to me. Sue Mayer Mom to Sam (5) DS & on NACD Program Elevated MCV blood value & low homocysteine levels An elevated MCV blood value (Mean Corpuscular Volume) is typically elevated in DS (90 - should be in the 80's). It is elevated because of the CBS gene creating a folate/B12 deficiency. If this gets too high, it can lead to leukemia. Homocysteine levels are typically low in DS as well, for the same reason that the MCV is high - the CBS gene. You can lower the MCV and raise the homocysteine by supping Methylcobalamin B12, TMG and Folinic Acid. My brother's MCV was 90 and his homocysteine was 4 back in January. When we found out about the info above and how to fix those levels, we started supping my brother with extra TMG (500 mgs extra) and MethylB12 (1/4 of a 1000mcg lozenge). Well, we just got back his blood work this month and his MCV is now 87 (very good) and his homocysteine is up to 6 (excellent). Just thought I'd pass this info onto others who are interested. Qadoshyah *Got Down Syndrome? www.gotdownsyndrome.net Quote Link to comment Share on other sites More sharing options...
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